Through letters to Congress, policy statements, and, most recently, a rally on Capitol Hill, NORD has led a coalition of patient advocacy organizations in opposing the proposed reduction or elimination of the Orphan Drug Tax Credit (ODTC). This is one of the key financial incentives of the Orphan Drug Act, enacted in 1983, that has sparked development of lifesaving treatments for patients with rare diseases.
The tax reform bill passed by the House of Representatives would eliminate the ODTC. The legislation passed on December 2 by the Senate would greatly reduce it.
NORD and many other patient organizations feel the loss of the ODTC would significantly reduce pharmaceutical investment in rare disease research and development. In fact, a 2015 study prepared for NORD and the Biotechnology Industry Organization by Ernst & Young concluded that one-third fewer orphan products would have been developed without this incentive.
NORD has said that it considers attacks on the ODTC to be “anti-patient and anti-public health.” To follow this issue, visit NORD’s Rare Action Network website.